A key pillar of the Stanislaw Burzynski antineoplaston marketing machine, a component of the marketing strategy without which his clinic would not be able to attract nearly as many desperate cancer patients to Houston for either his antineoplaston therapy (now under a temporary shutdown by the FDA that, if science were to reign, will become permanent) or his "personalized gene-targeted cancer therapy," which Burzynski represents as a discovery of his that large NCI-designated comprehensive cancer centers like M.D. Anderson or Memorial Sloan-Kettering are only now starting to copy, is the collection of patient testimonials that are used to sell Burzynski as able to cure cancers that no one else can cure. Of course, as someone relatively knowledgeable about the state of personalized cancer therapy, I can't help but wonder why the Burzynski machine never mentions Moffit Cancer Center, which has a very active genomics program and personalized cancer therapy initiative itself, or Mt. Sinai or Cornell, both of which are engaged in a genomics "arms race." Maybe he isn't as knowledgeable about personalized cancer therapy and targeted therapies as he claims. (Oh, wait. He isn't!) In any case, lacking any compelling clinical trial data (or at least, never having published a completed phase 2 clinical trial), despite having registered over 60 such trials, all Burzynski has is patient testimonials, what his propagandist Eric Merola likes to tout as patient success stories, patients like Hannah Bradley, Laura Hymas, Mary Jo Siegel, and Tori Moreno, all of whom featured prominently in one of Merola's movies promoting Burzynski. The problem is, although these cases seem compelling on the surface, when you look at them in more detail inevitably they turn out not to be very good evidence that Burzynski's antineoplastons or "personalized gene-targeted cancer therapy" can result in better outcomes than the existing standard of care.
So it was that when I wrote about Fabio Lanzoni teaming up with Eric Merola to promote Stanislaw Burzynski, multiple people asked me about a new patient, one who appeared for the first time in a Burzynski advertisement—excuse me, Q&A by Eric Merola. This is a patient who of late has been very active on Twitter both attacking Burzynski critics and singing the praises of Stanislaw Burzynski, all the while touting how Burzynski cured her stage IV triple negative breast cancer. She has also recently become one of the main users of the @BurzynskiSaves Twitter account, which formerly was run by someone whom many Burzynski critics suspected to be an employee of the Burzynski Clinic but was recently apparently handed off to a cadre of Burzynski patients, as revealed in Merola's last video. Clearly, she is a new recruit to the patients whose testimonials Burzynski and Merola use to promote the Burzynski Clinic. Her story, that Burzynski saved her from stage IV triple negative breast cancer, seems very compelling at first glance. But is it?
It is with a bit of trepidation that I tackle this case, because, no matter how careful, respectful, and nuanced I am, I can reasonably expect that I will be accused of "attacking" this patient. It is even possible that someone will call my university again to complain about me. Of course, I'm doing nothing of the sort and have no doubt that this patient genuinely believes that Burzynski saved her. My analysis of her anecdote, however, leads me to believe that she is probably not correct in attributing her survival to Burzynski. I also know that to a patient who is not an expert in cancer, a story like hers can seem all the world as though Burzynski really did save her and realize that I'm not going to change this patient's mind, no matter what I say. I do, however, want to critically examine her story, as told on various pro-Burzynski websites, because her story is being touted by Burzynski and Merola as yet another "success story" that proves that Burzynski can cure cancers that others can't.
The patient, Sheila Herron, touts her experience as a nurse for over 30 years and is a passionate defender of Burzynski, so much so that she sometimes gets a bit—shall we say?—carried away, invoking stormtrooper analogies and calling Burzynski critics "fascists," then trying to make nice with them not long after. She was diagnosed with triple negative breast cancer three years ago, and that happens to be my area of specialty. Triple negative breast cancer is an aggressive subtype of breast cancer that lacks hormone receptors or the HER2 receptor. Stage for stage, it tends to have a worse prognosis, with a higher recurrence rate and lower survival rate. Worse, contrary to hormone receptor positive breast cancer, which can be treated with Tamoxifen or aromatase inhibitors (drugs that block the action of estrogen) or HER2-positive tumors, which can be treated like Herceptin, triple negative breast cancer has no molecular targets for therapy that have been identified and validated yet. As a result cytotoxic chemotherapy is the only systemic treatment. It turns out that triple negative breast cancer is often very sensitive to chemotherapy—more so than estrogen receptor-positive cancers, by and large; the problem is that it rapidly develops resistance.
So what's Ms. Herron's story? The official version is recounted at—where else?—the Burzynski Patient Group's website. There's also a version of her story on Cancer Compass, which touts itself as a website that advocates the use of alternative cancer therapies. (No kidding.) On the Burzynski Patient Group website, the story is told thusly:
In Nov. 2009 I developed pneumonia and had a chest x-ray which showed a mass on the left upper lobe of my lung. This proved to be cancer. The PET scan leading up to the lung surgery, showed masses in my breasts. I had a left upper lobectomy in Nov. 2009, and bilateral mastectomies with reconstruction in Feb. 2010. I chose to take the holistic route, as I have seen the ravages that traditional chemotherapy inflict on the human body in the patients I have cared for. I will attach the link to the "Cancer Note" I wrote on Facebook which describes the steps I took to build up my immune system. (Let me know if the link doesn't work, and I will cut and paste it to you. A few weeks ago I had a local recurrence of my breast cancer and had surgery to remove it. This led me to call the Burzynski Clinic
It's not entirely clear from the account above (at least not to me) whether Ms. Herron had an early stage lung cancer successfully treated surgically and then was soon after diagnosed with breast cancer (in other words, had two independent primary tumors, each successfully treated with surgery) or whether her lung cancer was actually a metastasis from her breast cancer that was resected, followed by her diagnosis with breast cancer and successful surgical treatment (i.e., stage 4 disease). Her Cancer Compass account doesn't help in this regard, as it concentrates only on her treatment with Burzynski (and, as we will see, a whole lot of other woo), and her initial treatment was before she found her way to the Burzynski Clinic, although she does say she has "thanked my cancers (lung and breast) for all they have taught me, and have told them they can leave now," which sounds as though she had a lung cancer and a breast cancer. A little deeper digging was required.
It turns out that there is more information on this part of Ms. Herron's treatment odyssey on Facebook, contemporaneously dated April 2010. In a comment, she writes:
My cancers were discovered in Nov. 2009.
By MIRACULOUS good luck I got the flu (probably H1N1). I got pneumonia, went to urgent care and they did a chest x-ray, which showed a mass on my left upper lobe. I had a CT the next day, a thoracic surgeon consult 3 days after that, then a CT guided biopsy, a PET scan and a pulmonary function study done in the 3 days after that, and the next week had a mediastinoscopy/bronchoscopy and video assisted left upper lobectomy (12 days after the first x-ray- an example of the allegedly "terrible" healthcare system we have. In Canada I might just now be seeing the thoracic surgeon or having the PET scan. I am SOOOOO grateful to live here!!!). The PET scan I had (where they inject radioactive sugar and do a CT looking for metastastis) showed no lung metastasis, but a weird area on my left breast. After I recovered from the lung surgery, I had a mammogram, and an ultrasound guided biopsy (it turned out to be another, seperate cancer from the lung). I then had an MRI and underwent bilateral mastectomies with reconstruction in Feb...
My final reconstruction surgery will be May 4th- the new and improved me, breast cancer free.
What a miracle that flu was!!!!! I would have been walking around oblivious to both cancers if I hadn't needed that initial chest x-ray for the flu. My breast cancer turned out to be in both breasts as well. Amazing!! It never showed up on mammograms, (35% of breast tumors don't- surprise to me!)
I am taking the naturopathic route vs/ chemo/radiation and am doing great. There is SOOOOOO much we can do to help our incredible immune systems heal our bodies and/ OR (preferably) STAY healthy!! I was certainly not paying attention, or taking care of my body before this happened.
I AM now.
In a comment made on the Burzynski Scam blog, Herron writes (you'll need to scroll down a bit):
I was diagnosed with Adenocarcinoma of the left upper lobe of my lung in Nov. 2009, and had a lobectomy. The pre-op PET scan found my breast cancer, which turned out to be Stage III triple negative invasive ductal carcinoma. I went the naturopathic route vs/ chemo and radiation, because as an RN for 34 years, I have seen the ravages the traditional route can cause.
This clarifies things. Up to this point, these accounts are most consistent with two separate primaries, one an adenocarcinoma of the lung, which was resected thoracoscopically, and a second cancer in the left breast, arising from the breast. Consequently, up until this point, what we most likely have is a woman who was unfortunate enough to have two different cancers in two different organs, but fortunate enough that both of them were sufficiently early stage that they could be successfully resected surgically. Like so many testimonials I've discussed before, she refused chemotherapy and radiation in favor of lots and lots of woo, including naturopathy, massive changes in diet, green tea, juicing, Resveratol, reiki, "detox," and acupuncture. (And that's not all.) As is so frequently the case, by refusing adjuvant chemotherapy and radiation, which are the "icing on the cake" for surgery in breast cancer that decrease the chance of recurrence, she decreased her chance of survival. I did a bit of prognosticating using Adjuvant! Online, which allows me to estimate 10 year survival rates for cancers with various characteristics. If Ms. Herron had a stage III cancer, that means it was either rather large (greater than 5 cm), had a lot of positive lymph nodes, or both. According to Adjuvant! Online estimation, a patient with a stage III triple negative cancer treated with surgery alone has, depending on the specific features of the tumor, between a 24% and 57% chance of being alive in 10 years. (I ran the estimate using the worse features I could think of consistent with a stage III triple negative cancer, ran it again with the most favorable features I could think of, using an estimate of Ms. Herron's age to be around 58 based on her time in nursing.) Sure, those odds aren't fantastic, and I doubt she's at the 57% end of the scale, but even though Ms. Herron's odds were most likely less than 50-50 without adjuvant chemotherapy, they weren't so horrible that it would be considered highly unusual or rare for her to have survived.
So why did she go to the Burzynski Clinic? She tells the tale in multiple places. First, here's a continuation of the account on the Burzynski Scam blog:
I developed a small localized recurrence in Aug. 2011. After surgery, I went to the Burzynski Clinic in Sept. 2011. They ordered a PET scan which discovered my T-2 spinal metastasis. I started on his treatment and was followed up by an oncologist near me who works with Dr, Burzynski for my monthly labs and an injection. Twelve weeks, almost to the day of starting his treatment, my cancer was gone, as verified by my follow up PET scan Dec. 22, 2011. The radiologist had the before and after films up and showed me that it was all gone and that “there is no active cancer anywhere”. This treatment had no side effects, I did not lose my hair, and my monthly labs remained normal. How many other cancer treatments out there can say this? NONE!!!
And on the Burzynski Patient Group website:
I was encouraged to stay a few more days. A whirlwind of actions occurred the next 2 1/2 days. I had thorough blood and urine work-ups, as well as an echo-cardiogram and a PET scan, which was miraculous, for the PET scan showed a metastasis to T-2 on my spine. I was started on his medication on the first day and then low dose chemo for my metastasis and an injectable to keep my bone strong and prevent further metastasis. It is a miracle!! I would not have known about this situation until it had spread further, or until, possibly, my spine had a pathological fracture, which, that high up, could have caused quadriplegic, so I can, and I DO, say that Dr. B and his team have already saved my life by finding this tumor and getting me on their gene targeted regimen to remove it.
So about a year and a half after Ms. Herron's radical surgery rendered her disease-free, she developed a local recurrence. This is unfortunate. We also don't know for sure whether she underwent radiation therapy, although the story sounds very much as though she did not. Radiation therapy is indicated after surgery for a stage III breast cancer, because that can greatly decrease the risk of a local recurrence, even after a mastectomy. In any case, this recurrence must have been small, localized, and amenable to resection with a wide margin. In this, Ms. Herron was again fortunate, because all too frequently chest wall recurrences like hers presage metastatic disease, and all too often they tend to be too extensive to be amenable to a simple surgical excision.
But, wait, you say. Wasn't the spine lesion on PET metastatic disease? The answer to that question is: Maybe. We don't know. Why do I say that? The reason is simple. As far as I can tell, there was never a tissue diagnosis to prove that that T2 lesion was in fact metastatic disease to the spine. Most oncologists will not treat a breast cancer patient for metastatic disease without first doing everything within reason to obtain a biopsy and thus proof that the lesion is a metastasis. Just as important, tissue allows the oncologist to look at markers; sometimes estrogen receptor-positive tumors turn negative as they metastasize or sometimes the HER2 status changes. Such information is very useful for planning therapy, rather than just basing additional therapy on the original surgical specimen. I've looked around, and nowhere have I been able to find an account of Ms. Herron's treatment in which Burzynski got a biopsy of the spinal lesion before initiating treatment. PET scans can be misleading; they can have a not insignificant false positive rate. Actually, in fact, depending upon the clinical situation, they can have a high false positive rate. There are lesions on PET that can mimic metastasis. For instance, fibrous dysplasia of the bone can mimic skeletal metastases, as can osteonecrosis, inflammatory lesions, and others. Quite frequently, these lesions disappear when a patient is rescanned a few months later.
True, there are exceptions to the "tissue rule," such as if it's unsafe to biopsy due to location or patient comorbid conditions or if the lesion is so characteristic on an MRI or CT of the involved vertebrae that there is no doubt. (One notes that no mention of imaging of the spine is made other than the PET scan.) Even accepting those exceptions, a tissue diagnosis would still be essential, especially in this case, before starting treatment of bone metastases. Remember, this is a patient who apparently had two different cancers diagnosed three and a half years ago. Although less likely than breast, the spine metastasis, if it was real, could have been lung cancer. However, despite every indication for obtaining a tissue diagnosis, as far as I can tell Burzynski apparently never got a biopsy of the lesion detected on PET scan before beginning treatment in order to confirm metastatic disease and identify tissue type. In retrospect, given the clinical behavior of this "metastasis," most likely what happened is that Burzynski treated a false positive PET lesion, and it did what nearly all false positive PET lesions do: It disappeared within a few months.
Alternatively, it is possible that this lesion was a metastasis and that the chemotherapy that Burzynski administered shrank the tumor to microscopic disease, but, most likely, did not eliminate it entirely. Personally, I'd prefer the first possibility over the second. No, the reason is not because it would mean that Burzynski's "personalized gene-targeted cancer therapy" doesn't work, but because the first possibility would imply a good chance of long term survival for Ms. Herron. The second possibility would be much less favorable for her; it would mean that, sooner or later, her cancer will likely recur. I do not want that to be the case. Regardless of my wishes and whatever the case really is, without a report of a tissue diagnosis, it's impossible to distinguish between the two possibilities. The point, of course, is that Ms. Herron's case, like virtually every other Burzynski patient case I've analyzed, is not convincing evidence for an antitumor effect due to Burzynski's treatment, although it is also possible that her story could mean an antitumor effect due to Burzynski's "everything but the kitchen sink" approach to combining chemotherapy and targeted therapies. As is always the case whenever Burzynski mixes and matches chemotherapy and targeted therapies, he might have gotten lucky, and Ms. Herron's tumor was responsive to the cocktail. Without a lot more information, we just can't tell which possibility is most likely. We can tell, however, that it's unlikely that Burzynski is the cause of Ms. Herron's good fortune.
Finally, Ms. Herron is not undergoing antineoplaston therapy, but rather Burzynski's "gene-targeted therapy." This led me to wonder: On what basis is he "targeting" his therapy? As I've recounted before, Burzynski usually sends off blood and tissue samples to Caris for testing. The Caris Target Now™ test, which since my discussion of Burzynski's "personalized therapy" appears to have been renamed Caris Molecular Intelligence and is now available at more levels of service (although its reports look much the same to me), is nothing unique to the Burzynski Clinic. Anyone who is willing to pay for it can have it, and the report will be the same. Given that Burzynski appears not to have gotten tissue before treating Ms. Herron, what did he send to Caris for testing? Maybe he sent blocks from her original tumor. Who knows? In any event, there is as yet no convincing evidence that the Caris tests (or any of the other competing tests) result in better outcomes.
I'd like to conclude by saying that I wish Ms. Herron well. Really, I do, despite her intemperate behavior on Twitter. That's actually why I hope that Burzynski really did treat a false positive PET lesion, because that explanation for her good fortune would be most consistent with its continuing indefinitely, in contrast to an actual treatment effect, which would imply eventual relapse. When it comes to Burzynski, on the other hand, I'm not nearly so benevolent. In my ever-Insolent opinion, he and his propagandist Eric Merola are cynically using patients like Ms. Herron as human shields to deflect criticism. I can put up with a lot from cancer patients, even Burzynski cancer patients, and never respond in kind. Burzynski's activities I cannot countenance.
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I don't know, but it seems to me that a complete spinal cord lesion at T2 would lead one to be paraplegic not quadraplegic as the nerves to the arms would not be affected. I know I am nitpicking but it always bothers me (as a physical therapist) the way people will inflate the possible damage that could be done.
It is not hard to imagine the psychological stress of finding a lesion on the PET scan and then the overwhelming sense of relief once it was gone. Considering that Ms Herron had undergone and recovered from at least 3 surgeries and was not subjected to a fourth, it is no surprise that she is psychologically vulnerable. Let's hope that the last lesion was just an artifact. The effect of recurrence in this manipulated patient is likely to be devastating. Of course for Dr. B, the patient will have become old news and a new "miracle" will replace her. Thanks for keeping a spotlight on this lowlife.
Another reason to biopsy the T2 lesion (aside from confirming malignancy) might be to differentiate lung from breast metastasis, assuming therapy would differ depending on the primary site. If Burzynski's chemo cocktails are "individually" prepared, this strikes me as a possibly essential step.
I can reiterate what Orac said about false-positive PET scans. We see this quite often. It would certainly be a more impressive testimonial if there was proof that the spinal lesion was metastatic tumor and not an unrelated, benign anomaly.
It's puzzling that Ms. Herron recounts having gotten part of her left lung removed, when a PET scan had also showed a "weird" breast lesion. You'd think someone would have wanted to biopsy that first to exclude the possibility of a lung metastasis from the breast.
*In case anyone is wondering, adenocarcinomas of the lung and breast (invasive ductal carcinoma is a form of adenocarcinoma) can be differentiated under the microscope, frequently on the basis of their morphology but also due to differing expression of markers that can be evaluated through routine immunohistochemistry.
This is why you're such an invaluable asset in the fight against cancer (and other) quackery. You critically examine and dissect the available evidence using every possible tool available, and give thorough explanations as to why the claims cannot be trusted.
What's interesting is how these "survivors" (or even family members of dead patients who still shill for Stan) alter their accounts over time. The internet remembers everything, and in some cases stories told in 2013 will differ markedly from earlier versions.
I just hope she is cancer-free and remains so, given the type of recurrence she's likely to have.
Oh, bullshit.
As a canadian, I am so freaking tired of hearing that crap.
1) Cancer patients receive treatment as fast in Canada as they do in the US, and I know a number of cancer patients who can testify to that
2) They receive the same standard of care as they do in the US
3) The only difference is that don't check your credit line before they do
4) Its major failing with regard to cancer patients, at least in quebec is that it is difficult for them to enrol in clinical studies, or to get approval from the government to pay for a drug with no demonstrated efficiency. But nothing keeps you from buying it yourself.
Unless "individually" means according to the person.
Burzynski doesn't strike me as understanding either the biology of cancer or genomics. It wouldn't surprise me in the least that he considers "cancer" to be a single entity, like a lot of cancer quacks.
Fantastic post. That answered a lot of my questions.
@Kemist - it's the same here with the NHS. You get whatever the current best practice is, but you're free to pursue private health.
Also, not sure what it's like in Canada but here in the UK, even private care is nowhere near as expensive as care in the US. I have private, comprehensive coverage for £40 a month. No excess, no co-pay.
@elburto
There is no "private care" here for things like cancer.
What you can get are things like medical imaging, plastic surgery, family medicine and orthopedic surgery in private clinics - low-risk stuff, even if some people have ended up dead from low standards in private plastic surgery clinics.
Private plastic surgery clinics exist because the RAMQ (the organism that oversees our single payer health care) won't cover expenses that have nothing to do with health per se.
Private orthopedic clinics have opened due to long waiting lists for orthopedic surgeries, and (borderline illegal) private family practice because rich suckers think their little snowflake's sore throat is more important than a poor person's heart attack*.
It is illegal in Quebec to sell private health insurance, except for drugs, dentists, and secondary care like physiotherapy, ergotherapy, consults with psychologists, ect.
It is however legal in Alberta.
*No, I am definitely not a proponent of private healthcare systems.
@Kemist #10:
"It is illegal in Quebec to sell private health insurance"
Translation: It is illegal for a middleman to profit from the misfortune of others.
I like the sound of that.
Personalized gene-targeted cookie, please.
And that's another canard that I'm definitely fed up with.
Most people have a very simplistic notion of what constitutes "chemotherapy", and that's understandable. I understand however that this lady was a nurse for 30 years, so she definitely should know better, especially if she has worked with cancer patients.
"Chemotherapy", like "cancer", is not a single entity.
No, most types of chemotherapy are not pleasant. But not all of them make you lose your hair. Not all of them are even given intravenously. Some have minimal side effects - at least, side-effects that are much less severe than what Burzynski patients describe.
Burzynski fools patients by simply renaming what he gives them as "not-chemo" or "gene-targetted chemo" (whatever that might mean when you don't even understand, or even less study what you're supposed to be targetting) and by trivializing side-effects which are not what anyone sane would call mild.
I'm embarrassed that this woman is a nurse. Orac needs to share the brown paper bag mask with lilady and me.
I hope she recovers. I hope the chemotherapy that Count Stan has her on cures her. I've actually reviewed medical records from patients on his protocols. He uses FAR more chemotherapy, and in stranger combinations, than most trained oncologists. And his "non-toxic" antineoplastins -even orally - need to be slowly ramped up, and patients are questioned regularly for side effects and toxic levels.
But I wish harm to no one. Not even those whose charts I reviewed - who had relapses, died, or stopped his treatment due to the toxic effects (I honestly can't recall 1 chart I reviewed where the person was cured...and most had had conventional treatment also. Those who hadn't...didn't recover).
I only feel sorrow for them.
Kemist - Not a fan of private healthcare either, but I'm not the one paying for it. It's an employee spousal benefit provided by OME's employer.
Also, private care here is an adjunct to the NHS. You still have to be referred by a GP for consultation for your hip replacement/MRI scan/sigmoidoscopy or whatever.
The only exceptions are for cosmetic procedures. Often care is still provided in NHS hospitals by NHS doctors working outside of their contracted NHS hours. The fees they pay to the NHS to be able to do that can seriously help out a unit that's [CONTENT DELETED DUE TO EXCESSIVE POLITICAL RAGEWANKING].
Hi all you commentators on my life. I have enjoyed reading your comments, as well as the BLOG. Thought the BLOG is well written in the word department, it truly misses the mark in the accuracy department, and since we are obviously not on the friendship level, I will not make the effort to correct the errors. Suffice it to say, Dr. Burzynski HAS saved my life and my mobility, and continues to work on my behalf to keep it so. I don't care what the physical therapist here nit picked about, I am not paralyzed from my T-2 level down. I am alive. I am active. I am happy. I am well. My whole medical team, which, by the way, contains 2 other traditional oncologists outside of Texas who work with Dr. Burzynski, agree. I must truly have gotten under your skin to have warranted this much effort, and for that I am truly pleased. Your attacks on this wonderful man, who none of you have met or know, based purely on BLOGS, etc.. is shockingly unscientific, and would make me ashamed to be a part of. Since none of you have my medical records, op reports, scans, etc... all you can do is guess, other than reading dated entries on Facebook. But hey, go for it.
Thanks, Kemist. You beat me to it.
When my mother was diagnosed with possible breast cancer (turned out to be a DCIS, don't remember what stage, with some involved lymph nodes), she was in the oncologist's office the next week after seeing the GP. The elapsed time was something on the order of five days, including a weekend. Contrast with all the Americans I know who don't even have a regular doctor...waaoh.
By the way, thanks, Orac, for all your writing here. All your informative essays on cancer over the years (I've been reading since I haven't got a clue, but long before Scienceblogs was a thing) really demystified the process for me and helped me stay sane and hopeful while my mom (and, let's be honest, my late cat who died of lymphoma) was going through all that. I owe you one. If I ever meet you, allow me to buy you a beverage of your choice.
"They call me an anecdote," she complains on Twitter.
But that's the whole point...! One person's story is always an anecdote, by definition. She lived, good for her. But other Burz patients have died. Which is more common? Who's the anecdote?
All Burz has to do is post his 35 years of patient data online (which could be done in a week), thereby proving beyond doubt that his patients have better survival rates than normal, and he wins.
The skeptics would be silenced. The supporters vindicated. Millions of lives would be saved. Burz would become a billionaire and win the Nobel prize, his place in history assured.
Yet he doesn't do this because...?
Anyone?
I see nurses who peddle woo stories as quite dangerous, possibly even more so than doctors who do. Doctors have a reputation (earned in some cases) of being distant and remote, whereas nurses are seen as being much more directly involved in caring for patients. So when someone makes a statement like "because as an RN for 34 years, I have seen the ravages the traditional route can cause" people tend to pay attention. I mean, she's a nurse! has been for 34 years! She's probably seen lots of cancer patients!
But the trouble is, she possibly hasn't. What most people don't realise is that nursing can be just as specialised as doctoring. I just did a quick search online of vacant positions in the Health organisation that employs me - and most of the nursing positions in specialised fields (eg emergency, ICU, obstetrics) require formal nursing qualifications in that field. I couldn't find any open oncology or related positions, but I have a friend who happens to work at my region's main cancer treatment centre, and I know she had to go through quite a bit of training when she got the job (and before she got the job),
So if someone claims health expertise based on their nursing experience, my question would be, "have you worked in that field? Because if you haven't worked as an oncology nurse, don't insist you know all about cancer treatment, COS YOU DON'T."
Did you have the lesion on your spine biopsied, Sheila?
She's filed a complaint against Orac with his state medical board and his employer for being "unethical."
Hey Sheila,
Don't forget to read more about you on the second Fabio post. More fodder for your complaint.
http://scienceblogs.com/insolence/2013/05/08/eric-merola-and-stanislaw-…
Well, I did some more processing and reflecting since my first comment and have come to the decision that this is something that warrants being submitted as an official complaint to your State Medical Board. I have been on the cancer ride, have had to look potential death in the eye and then get to read a BLOG like this, written from a foundation of prejudice and bias right out of the gate. By making medical status and care assumptions based on dated postings I made in Facebook, with which you missed the accuracy mark repeatedly and big time, you crossed the line. And, based on some of the comments I read here, your posse bought it as fact. This is very revealing to me. I feel offended by this, for myself, as a person fighting for her life, and for my Dr. who you have again and repeatedly attempted to mock and demean, when you have none of the facts right. This really crossed the line. If I had asked for your medical opinion, if you had all my records and scans, this would be one thing, but you had none of those. This is unethical behavior for and MD. An official complaint is pending. I hope this will make you think before you do this to another patient, and that you use some real scientific reasoning, not just arrogance and your MD as credentials.
If having a Twitter meltdown constitutes "filing" something, I suppose. What's she on about with the "Wow, my comments are gone ... Whassup" routine?
Just typical paranoia. She doesn't realize that everyone's first comment here is moderated and approved. It's simply to prevent spam, not to censor anyone's free speech. After that her posts will appear immediately, unless they contain more than two links. Again, simply to prevent spam.
Wow, Sheila is popular today:
http://www.skeptical.gb.net/blog/
I remain curious as to what acronym the insistent full caps on "BLOG" is meant to denote. Anyway...
I suppose it's too late to move to Texas in order to immediately neutralize this threat.
I suppose it’s too late to move to Texas in order to immediately neutralize this threat.
Best Comment of the Day Award goes to Narad.
Sheila forgot to end her threat comment with the phrase "govern yourself accordingly."
Since I unfortunately share the diagnosis of triple negative breast cancer with Sheila, I'm particularly interested in this discussion. As you mentioned, Orac, we TNBC patients have an especially high risk of recurrence and not a great prognosis, so I'm acutely aware that at any point I may need additional treatment for my own life, so I'm always on the lookout for new developments or options. If Dr B really has the cure they claim, I'd be first in line to spread the word. Unfortunately, I think Mark McAndrew nailed it:
"All Burz has to do is post his 35 years of patient data online (which could be done in a week), thereby proving beyond doubt that his patients have better survival rates than normal, and he wins.
The skeptics would be silenced. The supporters vindicated. Millions of lives would be saved. Burz would become a billionaire and win the Nobel prize, his place in history assured.
Yet he doesn’t do this because…? "
For me, the bottom line is why all the dishonesty? Why won't he publish? Why aren't patients like Sheila pushing for him to document their miracle cures so other patients can benefit? Why does Sheila bother to pretend outrage (just moments after she was all giddy about being written about?!) instead of offering more information and details about her case and answering questions? I'm all for patient privacy but for crying out loud, if you're going to put yourself out there as a spokesperson to promote a miracle cancer cure, you damn well need to show some evidence and facts. Bah!
Oops, forgot to say thanks to Orac for all the detailed explanations you've shared. Breast cancer patients like me appreciate your willingness to help deconstruct dangerous quackery like this, and our lives depend on honest, accurate, and complete information. Thanks again!
thenewme,
I thought of you yesterday as I read Sheila's Cancer Compass page (Orac has the link above in the original post). A list of pretty much everything except black salve..
thenewme,
According to some Twitter fans, Burzynski has all the evidence and has even given hard copies to some patients. (One fan even said testimonials are more important than trial data.) I guess you play to your biggest strength.
Maybe that evidence is contained in the "two-and-a-half-million pages" of trials he submitted to the FDA.
#16 We are very glad to hear you're healthy! I for one hope you will remain so.
Please tell Burzynski to publish his clinical trial results in a reputable, peer-reviewed journal, if you believe in his work! Then we will all begin to believe in his work.
Seriously, it is that simple.
@MSII,
Yeah, I saw her Cancer Compass page with her laundry list of Woo. I also noticed all the affiliate links to more woo. The more I'm around this stuff, the more cynical I become about the ratio of those who actually believe in woo versus those who pretend to believe it in order to sell their crap to others.
Among their thousands and thousands of miraculously cured patients and millions of binders full of evidence, not one single complete clinical trial publication is to be found? Hmm. I'd be happy to publish it for everyone to see if I were a success story. Who wouldn't?
@Khani,
Absolutely. I think we're all happy she's doing well but baffled why she doesn't want the same result for others.
If she really cared about others, instead of playing her Jekyll-Hyde Twitter games she could scan and upload the evidence she claims to have.
Poor delusional Sheila. She put her anecdotal cancer survival story "out there" and now is indignant that science bloggers have analyzed the partial medical history she provided. How about proving that Orac is wrong, by "filling in the blanks", Sheila?
When you made that complaint to the medical board, did you enclose your testimonial, along with the medical advice you are providing on the internet i.e. practicing medicine without a license? You really should be concerned about your nursing license, because nurse licensing boards are far more strict than the Texas Medical Board.
http://cancercompassalternateroute.com/testimonials/healing-with-dr-bur…
How do I go about filing a counter-complaint? Seriously.
Please don't heed this threat. I, for one, appreciate these "case studies." It's helpful for non-physicians like me to understand how what appears to be evidence for a cure is, in reality, something else entirely. Maybe future reexaminations of patient testimonials can be written without naming names (but still providing relevant links). That way, people who Google themselves won't immediately know when you're writing about them, and they therefore cannot complain, issue childish threats, and harass you and your employer -- well, at least not right away.
Dear Sheila.
I hope you continue to do well with your health. Really I do. You have seemingly managed to reach that upper echelon of individuals who have apparently done well from the Burzynski clinic.
You are the famed 1% of the 99% confidence interval. The outlier in the data - the most improbable of the improbable. Someone that has managed to survive despite being treated by the clinic.
Of course, given the extensive laundry list of alternative medicine treatments you've tried - I don't see how you can attribute any success to the clinic - too many confounders exist. But that's what the clinic hopes for.
Burzynski is a charlatan. He refuses to release his 'data' from the 'clinical trials' that he's been pursuing for at least a decade. Why is that? What is he hiding? The fact that his 'treatment' is bunk?
Couldn't have said it better, Darwy.
Sheila, it's really simple, there are only two possible scenarios at play here:
Either, Burzynski is a lying scam artist preying on the vulnerable and the dying, and profiting from their desperation
or
He truly does have the cure for hundreds of types of cancers*, but he's keeping it to himself so that only he can profit from it, and only patients with wads of cash can afford it. This means he's content to let millions of people die every year, unless they can get to his clinic.
Either way the chips fall, he's filth. It's lose/lose for the terminally ill, and win/win for Stan.
* I presume you know that they're all different diseases, with different causative agents and different responses to treatment?
Christine - Sheila is currently a perioperative nurse. Of course this proves nothing about her experiences. I offer it only as an answer to a question. She's been a nurse a long time and no doubt has had many valuable experiences.
I'd like to to know however when Sheila decided that the "naturopathic" route was no longer the right one for her, and decided that chemotherapy by Burzynski's hand was ok? What changed her mind?
It would probably have more impact were Sheila to prove Orac wrong than make a complaint. However, since the response is another attack and no correction I guess all we can do is presume that he is closer to the truth than she'd like.
This by the way Sheila, is how evidence works. You're saying that your testimony is enough to prove Burzynski's treatment works. Above you see your testimony interpreted by someone with a lot of knowledge and experience with your disease. You say that Orac's interpretation is incorrect, but offer nothing to back up that assertion. Yet you want us and more importantly desperate cancer patients to accept your anecdote and others like it as proof, and eschew proven treatments in favor of Burzynski's. If your anecdote should be enough to prove efficacy, then Orac's account of it shouldn't be as full of errors as you suggest.
The clinical trial system is the only way we have to protect patients against dangerous or ineffective treatments. It's not perfect. It's difficult to negotiate. Without it we lay vulnerable to an unstoppable flow of vultures ready to take advantage at sick people when they are at their lowest. But until Burzynski is prepared to present his data for scrutiny, he will continue to invite this level of opposition, because some of us do care about quality medical care. We're concerned about the proliferation of vultures that prey on the unwell. The published data may not stand up to the scrutiny, but at least it was presented. Instead, it's hoarded, with patients and their anecdotes thrown up as shields in an attempt to absorb and deflect the scrutiny that rightfully should be on Burzynski and his trials alone.
To be honest, I fail to see how discussing and analyzing information publicly posted on websites and blogs is in any way an "attack" or "unethical." I've done this with cancer cure testimonials from a number of patients, and not just Burzynski's. In fact, I've been doing this sort of thing intermittently with cancer cure testimonials of many sorts for years, since 2004:
http://oracknows.blogspot.com/2004/12/understanding-alternative-medicin…
So have other physicians:
http://www.cancerwatcher.com
My readers recognize this as a valuable service, because it helps them to understand why such stories are usually not the slam-dunk evidence of a cancer cure that they are being presented as.
Most such testimonials get their persuasive power from the passionate belief by the person telling the anecdote that she was cured of a hopeless cancer, lack of understanding of cancer biology and treatment, etc. In any case, I simply looked at how Ms. Herron told her story and suggested that it isn't the slam-dunk evidence that Burzynski cured her that it is being advertised as by Eric Merola. Certainly, it's possible that Burzynski cured her, but there is also considerable doubt to me that he did, based on the timeline of events told by Ms. Herron herself. None of this means that Ms. Herron is lying (as she might claim I'm accusing her of). It simply means that she has drawn conclusions from her experiences that are not supported by science, in my opinion.
Now, as I said before, I understand that she's really passionate about believing that Burzynski saved her. I also understand that she views criticism of Burzynski as personal attacks on her. That is, of course, her right, but that doesn't mean that they are.
It is not my intent to attack Ms. Herron in any way, nor, do I believe, have I. In fact, I bent over backward to be civil and take her beliefs into account. Nor have any of her comments been blocked. The first one went into moderation, as comments from all commenters who have never posted a comment here before do. I approved it as soon as I saw it.
Also, if I have made any errors, Ms. Herron is, of course, free to point them out, and I will correct them. I assumed that her postings about her battle with two cancers on various websites provided the information she wanted to provide.
I have to say it mightily p!sses me off when people place a testimonial, especially for cancer, in the public domain and then complain when it gets analyzed. Testimonials of this sort are clearly intended to persuade people to pursue a particular treatment, and it is important that they are open to criticism, especially informed criticism such as Orac's in this case. People with cancer have a right to accurate information to enable them to make an informed decision about what treatment they wish to pursue. It seems to me that the sort of censorship Ms. Herron appears to wish to apply would take this right away from other cancer patients.
Sheila, you are actively promoting an unproven treatment using your details, and those of others, in a PUBLIC place. This means that people have the right to discuss those details. If you are happy to have your case used to publicise Burzynski and try to persuade other patients to go there, then others have every right to challenge those details. I'm sure your regulator would be fascinated to hear how you've behaved, but we won't go there because that would be stooping to a level that only Burzynski and his team use.
Not once have you even attempted to address the very real and sensible criticisms of Burzynski. I understand that you're probably not able to understand the issues, but your time would be much better spent persuading him to publish the data from his trials rather than abusing his critics.
There's another patient testimonial on that Cancer Compass page (on the right side) that, while not relating to Burzynski, illustrates to me how self-deluded alternative devotees can be.
A woman with breast cancer used black salve (ugh!) to "remove her tumour" (there's a gross photo that accompanies the narrative) and then she adopts a Robert O. Young alkaline diet accompanied by live blood analysis. Quackery squared.
Anyway, after a year or so (I forget the actual timeline) she updates the story by saying her latest live blood tests are "bad" and she has to "fight this thing," implying there are signs the cancer has returned. She blames this on the fact that she lapsed from the alkaline diet, not because of the fact that the damn black salve didn't work, and never works, in the first place. The tenacity to the belief in the black salve is similar to the tenacity of belief that Burzynski's protocol cures.
Cognitive dissonance or simply a refusal to admit she was wrong about the black salve (bs, appropriately)?
That's how I used to react, but not so much anymore. Now I react more with resignation, because I've seen it so often. People who believe an alternative cancer cure has cured them of an incurable cancer seem to conflate what they write on the Internet with their private medical records, when the two are not the same. I would never, ever write about a cancer patient's clinical records without express written (and notarized) permission to do so. They are private, and I am both honor- and HIPAA-bound not to do so. However, a description posted on the Internet in a public forum is another beast entirely. It is not medical records. It is public speech, and the First Amendment allows me to bring my medical knowledge to bear in discussing it. Nor is it unethical because I have not breached patient confidentiality (there is none for information posted on the Internet), and I'm very careful to point out (repeatedly, in fact) the limits of what we know from these accounts. You will note that I spun alternate scenarios based on what might have happened one way or the other and hedged my speculation very carefully, liberally using words like "probably" and "possibly." Even in the case of patients who have allowed actual medical records to be posted on either Eric Merola's website or the Burzynski Patient Group, I realize that those records are most likely carefully chosen to support the message being promoted. I also note that discussing such medical records similarly is not a breach of HIPAA, privacy, or doctor-patient confidentiality because they were posted in a public domain accessible to anyone.
Even though I've seen it again and again, although I no longer become angry at how some people post their cancer stories on the Internet on a public forum and then become enraged when someone like me discusses them critically, I must still confess to not a small degree of puzzlement. If you don't want people talking about your medical history, then you shouldn't discuss it on the Internet in a public forum, where anyone from anywhere in the world can read it. Once your story is out there "in the wild," so to speak, you can no longer control what people say about it. That's just common sense.
I rather expected that Ms. Herron would eventually find this post, which is why I mentioned my trepidation about writing it. She has complained to my university in the recent past. Fortunately, the dean on whose desk the complaint was social media-savvy and recognized immediately that I had done nothing wrong, as did the university attorney. However, as has been pointed out above, Ms. Herron is using her story to promote Dr. Burzynski. That is her choice, and she has every right to do so. Analyzing her publicly posted story is my choice, and I have every right to do so, as I have made it my mission to try to get solid, science-based information out there about alternative cancer therapies, and part of my approach has been to analyze publicly posted patient stories to see if they are persuasive evidence that the alternative cancer cure in question works.
Some examples of patients who were not Dr. Burzynski's:
http://scienceblogs.com/insolence/2012/08/21/yet-another-dubious-breast…
http://scienceblogs.com/insolence/2012/10/12/a-slightly-different-alter…
http://scienceblogs.com/insolence/2011/04/12/yet-another-misleading-alt…
http://scienceblogs.com/insolence/2010/09/28/the-testimonial-of-hollie-…
I'm sorry if my careful analysis of her Internet postings upsets her, but Ms. Herron does not have is a right to try to control how her story is discussed after she has made it publicly available. Again, that's just common sense.
I'll conclude, once again, by pointing out that, if there are any errors of fact in my account, Ms. Herron is more than welcome to correct them. That has been my policy for over eight years now.
As someone who has published papers in peer-reviewed journals, I would seriously question the competence of someone who cannot put his data in an easily understood one- or two-page table.
And I would probably not waste my time reading two-and-a-half million pages from someone who pretends to do clinical reasearch but can't be arsed to learn statistics or to hire a statistician.
@MSII #46: "Anyway, after a year or so (I forget the actual timeline) she updates the story by saying her latest live blood tests are “bad” and she has to “fight this thing,” implying there are signs the cancer has returned. She blames this on the fact that she lapsed from the alkaline diet, not because of the fact that the damn black salve didn’t work, and never works, in the first place."
Live blood tests are utterly meaningless. It's like predicting the future by looking at tea leaves. The results will be nothing to do with whether she's followed the "alkaline" diet or used black salve, except presumably beforehand, she told the practitioner all about what treatments she'd used, what diet she'd followed and about any symptoms she might have noticed. I expect there were other more meaningful signs that the cancer had returned.
It's uttterly heartbreaking to hear about people putting themselves through this, to have such faith in utter quackery, and dangerous quackery at that. Even worse when they deny themselves effective treatment. As far as I can tell, the people who use black salve tend to be the ones who have fallen hook, line and sinker for the big pharma cancer conspiracy nonsense.
Even after all this time, I still find it odd to see Burzynski alongside such "alternative" and "natural" treatments and lauded by people who mistrust conventional medicine. How can they not recognise that his treatments are medicines? Does it make it any better that he has a tendency to sidestep regulation? Or that he owns the companies which make the medicines?
I unfortunately understand how someone would choose to go that route, and also why they'd blame themselves when it fails.
My best friend died from ovarian cancer about 2 years ago*.
Despite being involved in cancer research herself, and being sometimes more informed about the biology of her cancer and the different treatments than her doctor (she asked for a sample of her tumor to be tested for ER before accepting to take premarin post-surgery, and it turned out positive), she did favor some (relatively harmless compared to black salve) woo along with her chemo.
She also blamed herself when she had (expected as the normal course of her disease) recurrence. For stupid things like "negative thoughts" and "eating sugar". I raged inside against the well-meaning idiots who'd told her those things mattered when I saw her like that. To see someone you love, sick and vulnerable, be crushed by such meaningless guilt, for the crime of being human....
But the well-meaning idiots (or heartless crooks) are convincing. They tell you what you want to hear about your chances. I too wanted them to be right. My friend would still be here today.
Chemo possibly gave her five more years - her disease was very agressive, and it most probably would have killed her within months of her sugery had she chosen the full woo route.
* The cancer killed her, not the chemo. Her oncologist had refused to give her further chemo when her tumor stopped responding. Believe me, chemo can be unpleasant, but the natural course of cancer is even less pleasant.
There's a YouTube video of live blood slowly drying out on a slide under the hot lights they use, with a voiceover of Robert O. Young describing what he sees, none of which bears any relation to reality (he claims that white spots on red blood cells are them fermenting, which is what causes diabetes), and there's another of him describing what are actually various bits of debris moving in and out of the focal field as bacteria pleomorphically changing into fungi, or some such impossible transmogrification. It would be hilarious if so many people didn't believe it. There are good reasons for hematologists using dried stained blood.
#42 She chose to go public with elements of her story, and she is being used as a publicity tool by Burzynski. Presumably, if she had not wanted to publicize Burzynski, she would not have agreed to this.
I'm glad you were civil to her when you did the analysis. She may feel like she's under attack; she is not.
We all want her to be healthy and cancer-free.
We all want Burzynski to release his data in a good journal.
We all want more good cancer treatments. If he has one, releasing the data will show it and we could all get behind him, Ms. Herron. Truly.
In these straitened economic times, I doubt the Michigan Department of Licensing and Regulatory Affairs enjoys the level of funding that would permit its staff to launch a full-scale investigation every time they receive a rambling screed that boils down to "I feel offended." The complaint form assumes that the doctor involved actually treated the complainant, obviously not the case here. Further, the complainant is expected to sign a waiver allowing the investigator to obtain relevant medical records. As Ms. Herron seems to prefer mysterious references to unspecified factual errors to actually providing facts, she may decline to sign the waiver. Should she follow through on her threat, her complaint is unlikely to go anywhere.
Second verse, same as the first.
As usual, the quacks (and their associates) can't bring science and facts to the table, so they have to attack the messenger, by filing bogus complaints or lawsuits.
Black salve? Is that the stuff that "works" by burning away tissue? If so, why on earth don't these people instead use battery acid or caustic soda? They're way cheaper and they do exactly the same job!
JJ,
Yes, I'm very aware of the live blood scam. I've been following your battles with that "Harley St. (not a physician." Is he the reason Keir decided to shut down The 21st Floor? I know he threatens and accuses bloggers and cites copyright infringement to try to shut you guys in the UK down.
I guess in the testimonial I cited I should have realized there were some other diagnostics she underwent to confirm the cancer had returned; that the live blood test would not have been able to tell her anything. I like your tea leaves analogy too!
This is what she writes about her initial experience with the live blood test:
It was during the time that I was extracting the first tumor that I met with Caroline Carter, a micro-biologist* (sic), who could do live blood analysis with a dark field microscope. Caroline tested my blood and saw that it looked bad. She said there are 10 stages to cancer cells…..I was at level 8, which she ranked as a stage 3 or 4 cancer. Right away she put me in a sauna box to have ozone therapy.
Stage 3 or 4 cancer...isn't that a little vague? Aren't there a lot of "steps" in between each stage? Why are people so willing to belive this crap?
*Is a "micro-biologist" a very short biologist? :)
Right away she put me in a sauna box to have ozone therapy.
A sauna box instead of an Orgone Accumulator? Obviously a quack.
Cookie please.
One more biscuit please...
I may have missed something here, I'm skimming and on my mobile, but if Ms Herron has been 'cured' by Our Man Stan (sorry, the Slade reference just popped into my head!), why does she write in her last post;
"I'm fighting for my life".
If this has already been discussed my apologies. Scrolling down on here is rather a pain
For those old giddy duddies who didn't understand my Slade reference;
http://en.m.wikipedia.org/wiki/My_Friend_Stan
I wanted to let you all know that the delayed BBC Panorama investigation on Burzynski will finally air on Monday June 3. Several Twitter skeptics in the UK will be live-blogging at #burzynski and #bbcpanorama.
Let's hope the episode will be posted on the BBC website shortly after airing, for all of us outside the UK.
Apparently it's a 30-minute segment but Rhys Morgan just Tweeted that his interview has been cut from the final episode (he was interviewed about the initial threats from my namesake and the worldwide Streisand effect that resulted).
Disgruntled former patient Wayne Merritt will be featured along with another prospective British patient who is currently raising money to make the trip to Houston.
I am utterly shocked by comments on this article. Let me ask you all this. How many of you have sat infront of a Neuro oncologist and have him tell you that you have 15 months to live? They can probably extend that by 3-6 months in the UK with Themozolomide and Radiation? Oh and by the way notify your life insurance company because that isn't a cure!
I'm guessing not many! I say that because what many comments here demonstrate is such a shocking lack of empathy for people who have had their lives changed by a horrible illness it makes me angry. Allow me to explain!
My name is Martin, I'm a 38 year old airline captain from Manchester in the UK. 9 days ago I had a brain biopsy and was
Diagnosed 15/5/13 with a grade 4 GBM. You cannot even begin to fathom the effect this has on your life until it happens.
Until very recently my wife Emma and I lead a normal life. All the aspirations of a young couple, both career minded pilots but also keen to have a wonderful home for a young family. Love holidays, friends, socialising and life and making a stable home into which to bring children. All of that has gone. Every last bit of hard work, testing, checking studying to become a very young Gulfstream Captain, every one of the many hours helping to build our home. All the dreams of a family, holidays with friends. Gone!
My name is Martin Vizzard, please scribble that down somewhere because i will very active in the UK from here on supporting the medical innovation bill in the House of Lords in the UK.
My fate was sealed on the 15/5 however if that can somehow be changed WHY would anyone want to deny anyone that hope. And if it doesn't work well I tried everything but that will in NO WAY change the outcome for me. However if I get an extra second with my 36 year old wife it would be worth every penny.
Will I be going to see Doctor Burzynski, you bet your life I will. I will be seeing every person who I think may be able to help me.
It sickens me to the pit of my stomach that such public insensitivity can be displayed by fellow planet dwellers.
I really do think you skeptics need to get out more and live your lives, you never know if you 15/5 will come for you as it came for me!
Just as an aside peebs, if someone is given a grade 4 GBM diagnosis i would assume from that point their fight and existence is a fight for life! Every second of every day!
Martin,
I am very sorry to hear about your diagnosis. If I may offer some advice should you go see Burzynski.
Based on looking at literally hundreds of patients and putting them up at theotherburzynskipatientgroup.wordpress.com, I recommend a few things for your protection:
1) Tell the clinic staff that you are making an audio recording of all dealings that you have with them. Then make those recordings, especially when you are in consultation with the doctors and ABOVE ALL when you are meeting with the staff who deal with patient accounts. Don't allow what happened to Kathy B. to happen to you.
2) Get everything in writing. Do not accept verbal agreements. Do not allow what happened to Denise D. to happen to you.
3) Demand and keep a running copy of itemized charges. Do not ever leave the office without the most recent one.
Burzynski has nothing to offer but false hope and poverty. But if you end up in his offices, and I truly hope you do not, please protect yourself.
Hi Bob,
Thanks for your kind words.
Finance wise I've always been a planner and from the early days in our working lives made huge insurance provisions (critical illness we call it in the uk) for eventualities like this. I then made further provisions if we used that money and it didn't work. Then life insurance. So it's not really about money for us. It's about life. I think once money gets dragged into an argument of life and death credibility of an argument can become diminished. People see others looking in and question if it is "the green eyed monster" (Brit term)
At the moment I am symptom free and will be going to see every doctor who I think can help me. That includes standard treatment in the UK, U.S or anywhere else in the world. I will do it in the the order I decide based on my assessment, and if I mess it up, well, I know the consequences. Not based on ANYONE else's success or treatment but on MY assessment of what may give me a chance. 0.0000001% chance of it working, lets give it a whirl then! I'm sure you get the idea.
I need to explain to you all though how exasperating it is to be sat in an eminent oncologists office in one, if not the, most famous establishment in the world to be told. These are the rules of the treatment. Nope, I don't think so. I will be trying Burzynski and if it doesn't work we will move on.
When and if I finally look into my wife's eye's for the last time we can say we tried everything. Keep money out of it guys. Your miles ahead of the UK over here, why not embrace that!
Martin,
Have you looked at the difference between what Burzynski says publically, what his promoters say (and he does nothing to counter), and what dispassionate observers such as the American Cancer Society and Cancer Research UK say?
There's nothing wrong with using an unproven treatment with no demonstrable chance of success, as long as you are completely clear that is what you are doing. The people who offer these unproven cures are vermin in my view, but it is certainly understandable why people faced with no realistic prospect of cure from the world of medicine might be tempted. It's not just Burzynski, there are a legion of them. Gerson, Hulda Clark, Hoxsey - the FDA has a list of 187 fake cancer "cures": http://www.fda.gov/drugs/guidancecomplianceregulatoryinformation/enforc…
I cannot think of a shittier situation to be in. I like to think that if it were me I would show the kind of equanimity that Iain Banks has shown, but I bet I could not.
I'm terribly sorry for your situation. Really, I am. As I have pointed out time and time again when blogging about Burzynski, as a cancer surgeon who watched his mother-in-law die from a particularly nasty form of breast cancer four years ago, I understand the family's desperation. I hope I never understand from a first person standpoint the patient's desperation, but I'm human and there is no guarantee that it won't happen to me someday.
That being said, I would strongly advise you against going to Stanislaw Burzynski. There is no evidence that his antineoplastons are any better against brain tumors (or any other tumor, for that matter) than standard of care. He's had 61 clinical trials registered on ClinicalTrials.gov since the 1990s, and he's thus far published the complete results of zero of them. Here's my take on that:
http://scienceblogs.com/insolence/2013/02/20/a-brief-fable-about-a-phar…
And here are some things to consider if you found Burzynski through one of Eric Merola's movies:
http://scienceblogs.com/insolence/2011/11/29/burzynski-the-movie-subtle…
http://scienceblogs.com/insolence/2011/12/05/personalized-gene-targeted…
http://scienceblogs.com/insolence/2011/12/12/what-dr-stanislaw-burzynsk…
http://scienceblogs.com/insolence/2013/03/14/five-things-i-learned-seco…
Not the least of which is Burzynski's abuse of the clinical trial process and playing fast and loose with laws and regulations governing human subjects research:
http://scienceblogs.com/insolence/2013/03/26/stanislaw-burzynski-versus…
The reason I am so critical of Burzynski is because, as hard as it is to believe, it is possible for things to get worse for patients like you. You could suffer complications from a treatment with such a minimal hope of success, or you could find your bank account drained with nothing to leave to your wife and family. You could even potentially shorten the time you have left. As Guy said, if you still want to try, please be aware of what, exactly, you are trying.
Martin Vizzard,
I can completely comprehend that you want to try every doctor and every treatment that you think can help. What criteria are you using to determine which treatments are most likely to help and which are not?
Martin,
I wish you well but are you aware that Burzynski cannot give you antineoplastons anymore? You will be receiving regular chemo with a fancy and expensive name.
@ Martin: Please be assured that everyone who regularly posts here, and on other science bloggers' websites, have great empathy for you.
IIRC, many of us first became interested in Dr. Burzynski's treatment of a variety of cancers with Antineoplaston, when a teenage science blogger located in the U.K. wrote an excellent post about Dr. B's treatment protocols. For that excellent post he was targeted and threatened by one of Dr. B's public relations person, who, masqueraded as an attorney. Not only was the bogus "attorney's letter" threatening, he posted a picture of the young man's residence.
Quickly, the phony attorney, sent threatening legal letters to Orac and every other science blogger....which (eventually) caused his dismissal from the Burzynski clinic.
The ONLY bloggers on the internet who support Dr. B. are snake oil salesmen and a few medical doctors, who themselves practice their own forms of quackery and/or sell useless supplements and vitamins to credulous people.
Dr. B has no training as a medical oncologist and has no hospital affiliations in Houston Texas...or anywhere in the United States. He's been promoting antineoplastons for more than thirty years for every type of cancer imaginable, yet has never completed or published a Phase 3 Clinical trial:
http://en.wikipedia.org/wiki/Phases_of_clinical_research
I hope you take what I have posted and what others have posted, in the spirit that these posts were directed at you.
Thanks everyone for coming back to me. I think my initial post was maybe a little aggressive and apols for that. It wasn't my intention to offend. I am not here to argue, far from it. Never been an arguing type. What I am is a calculated thinking type able to look at a subject and be confident about making a sensible assessment of risk then activating my plan. You'll be all pleased to know that anyone sat at the controls of a passenger jet crossing the Atlantic or Pacific doesn't just have a plan A or B. If things go wrong, rule book out of the window and do what is needed to survive. Probably plans A to Z.
As it stands, every single facet of my life has changed. Nothing and I mean nothing will escape my attention. How can anything possibly harm me? If someone wants to give me a spinach and apricot enema I'd ask what time they wanted to do it? Some may say that's desperation but to be honest I feel far from desperate. I really honestly do feel like my life has taken a turn in a good direction. I'm certainly not scared and I am so positive that it really feels good.
I sat for an hour in Harley Street in London being told doing anything other than standard can harm me! I think the Oncologist was a little confused when I started laughing.
So to answer the question of one of the last posters the criteria I will apply is just common sense.
I've heard of ANP but not intending to have it in Houston.
Good point. The FDA investigated the Burzynski Clinic from January to March, and until it issues a report no new patients can be enrolled on protocols to receive antineoplastons. Existing patients continue to receive antineoplastons, but if you go to the Burzynski Clinic you will be offered his "personalized gene-targeted cancer therapy," which consists of a very expensive cocktail of chemotherapy and newer targeted agents whose selection Burzynski bases on a commercial gene test available to anyone. It's explained in this post:
http://scienceblogs.com/insolence/2011/12/05/personalized-gene-targeted…
I've been meaning to update that post, because the gene test he uses has changed, as I mentioned above in the post to which you responded.
One last thing. Before you conclude that your tumor is truly inoperable, you might want to consult with a neurosurgeon in Australia named Charles Teo. Reportedly he is able to resect some brain tumors that other neurosurgeons cannot.
http://scienceblogs.com/insolence/2011/12/27/on-leaping-to-conclusions/
Corpus callosum! I will certainly dig his details out and get the MRI scans down to him.
Thanks again for all the comments. I will most certainly keep you all updated.
Best wishes, Martin.
Ta
Sorry lillady, should have replied to you. I absolutely take that on board and in the spirit it is intended. I have made a note in the Vizzard grey matter (good part!) and it will form part of my decision making process.
Thank you for taking the time to impart your knowledge. I am here without motive or agenda and thank everyone for their good wishes and idea's.
M
Not sure if that link was meant for me or not! Thanks anyway!
Again, i'm not here for an argument and without motive or agenda. I have not been put under any pressure by any marketing person at the Burzynski clinic, i honestly have not. I looked around around an stumbled across his clinic and called them for information. I actually had to call them back to say "can you get a move on please because I will not be waiting for you". They will also be told in NO uncertain terms of my rules. Yes they are treating me but I'm paying and I'll call the shots. I always found that a good strap line when talking about money. Before any other discussion I've always said " let's get the awkward conversation out of the way, agree exactly on what we are doing and everyone will be happy!" I find that works very well. As long as it's documented of course.
Also I said yesterday I am far from desperate and it is nothing to do with money. My wife and I are interested in ME and finding help. Not based on someone else's treatment that has worked for them. I couldn't think of anything worse to do than follow someone else's lead because it may or may not have worked for them and although I wish anyone with Cancer well, their experience is of little consequence to me. And if at the end of the day the Burzynski clinic does not work I have many many other irons in the fire which I will look at and bid them farewell thanking them for trying to help shake their hands and leave.
Something I'd say though guys and something you cannot legislate for is how a person can change in a situation with let's say a GBM grade 4. I thought I'd be scared to death, crying, emotional wreck etc etc etc. I am stronger than I've ever been in my life. Nowhere near desperate, but calculating planning and VERY straight with people who don't do or say exactly what I want. I was chatting to Mrs Viz last night and said I hope I'm not coming across as arrogant because I never liked that.
It is MY search for MY possible cure. Wherever that may be!
MV
No, that link wasn't meant for you. It's just a crank who used to flood the comments here with rants to the point that he drowned out a lot of reasonable conversation. i had to ban him, and he decided to go off to WordPress and blog about how nasty Burzynski critics are. When he posts something new, it leaves a trackback here. I let his trackbacks through only because I think it's far more useful to let his nuttiness speak for itself. Also, they amuse me, because they are so bizarre.
I must be honest, though. I still think you're making a huge mistake and sincerely hope you reconsider. As I documented in the links I posted a few comments up and several others have also documented, Burzynski's claims are not supported by anything resembling good science or clinical trials, and IMHO he plays fast and loose with the clinical trials system and regulations designed to protect human subjects. His antineoplaston therapy is chemotherapy with significant toxicity. I refer to his "personalized gene-targeted therapy" as "personalized gene-targeted therapy for dummies," because he just uses a commercial test available to anyone and then, without much thought or consideration of potentially synergistic toxicities, prescribes a witches' brew of chemotherapy and very expensive targeted therapies. Moreover, he also tries to make you, the patient, buy these drugs only from a pharmacy that he owns at inflated prices. I'd just like to warn you: You can't trust anything the clinic tells you.
Martin,
Money may not be in short supply, but time may well be. Please don't waste what may be the last months of your life on Burzynski. My advice would be to get the best conventional care you can afford, and if they truly can't help you, accept it with dignity and wring the last drops of joy out of your life with your loved ones.
Is Burzynski charging people money to participate in "clinical trials"? Presumably that's how he's getting rich. Clinical trials should be conducted with volunteers and it should be illegal to ask them to pay anything. The trials should be funded by investors. That would ensure that charlatans could not get rich off desperate people. It would also ensure that there would have an incentive to complete the trials and publish the results so that they can move to production of successful therapies and recoup their costs.
So, does the Myriad decision moot whining about Scamley's piss-extract patents?
This blog is full of bull shit!! I don't know why do you spend so much energy to heat people who are trying real hard to make a break truth.Someone is paying you?????? I had people with cancer in my family and unfortunaly I did not know about Burzinsky at that time.They died, of course.The standart care means death!!! But they did not die before spending all their money and family money.What do you have to say about this?????
Paulo, if Burzinsky has an effective treatment for certain cancers, why doesn't he publish it in the medical literature so everyone can benefit?
Well, Paolo, if you want to trade anecdotes, my mother was diagnosed with breast cancer back around 1980, and received standard care, and survived the cancer with no re-occurrences. She died about 9 years ago, but that was from heart disease, not cancer.
As others have indicated, all Burzinsky has to do to be taken seriously is to publish his findings.
Given that there have been, out of the blue, two Burzynski necromancers in the past day, this question might better be asked of you.
I don't understand the anger and negativity. Let me get treatment where I want to get treatment and you get treatment where you want. If you think chemo and radiation work better go for it.